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JAK2 Mutation - Effects and Questions
Have JAK2 mutation verified twice; one year apart and from different labs. As I understand, it may cause polycythemia vera, essential thrombocytosis, or leukemia. My hematologist has not provided any real info on this mutation so I've been researching via internet. I knew leukemia is cancer but was disappointed to find out today that the other 2 are blood cancers as well. I have been seeing a hematologist every 3 mos. about this since my 2nd blood clotting event in 09/2016. To date, all my blood factors have been in the normal range. Here are some of my questions: 1. Is it typical to verify this mutation well before it triggers one of these diseases? 2. I know early detection of cancer can be a real plus, but is there any research or experience that supports proactive steps that can be taken to deter the onset of any of these possibilities? 3. With polycythemia vera and essential thrombocytosis, is blood letting the primary treatment? If so, can the blood be donated? 4. Since none of my blood factors have ever been out of the normal range to date, no specific result of the JAK2 mutation has raised its ugly head. Is this normal? I'm not typically a worrier. In fact, I do really well with things like this once I know what I am dealing with. Information becomes my sword which allows me to take worry and nip it in the bud.
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I have MDS/MPN with Thrombocytosis which means I have very high platelets (over 1.2 million). I was originally diagnosed with MDS in early 2021, and then developed ET in March of this year due to a JAK2 mutation.
My Hematologist/Oncologist told me that my ET is definitely cancer. I am taking 500 mg a day of Hydroxyurea and will need to take it for the rest of my life. I have no side effects at all from the drug.
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3 ReactionsGreat to hear that someone on here has been taking this for so long and it’s still working. The other medication choice is newer and is very expensive and has a different bunch of side effects to watch for. Hydroxyurea has been around since the 1960’s. I hope it keeps working for me. I’m just eight months in since my PV Diagnoses.
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2 ReactionsI see the Oncologist in October and will again discuss the dosage. He did not want to reduce it last time as platelets are in the 450 range. He wants to keep it below 500 (a big reduction from 1700! when they discovered this condition.
We did reduce the low dosage aspirin to 1 every other day due to excessive bruising. Thanks for the responses. I did see the one from the dentist and I will discuss with dentist re mouth sores which I don't have at the moment.
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2 ReactionsEssential thrombocythemia is an example of a myeloproliferative neoplasm. These are blood cancers that happen when your body produces too many blood cells. from Cleveland Clinic
from JohnsHopkins
Myeloproliferative neoplasms (MPNs) are a group of blood cancers in which the bone marrow produces too many blood cells. When this happens, patients are at risk for blood clotting or bleeding, bone marrow scarring and enlargement of the organs. Most patients affected are in their 60s or older. There are no known cures for most MPNs, although stem cell transplants can help people with myelofibrosis. Still, many patients can experience few or no symptoms for long periods of time, and people with these cancers can live for a long time with proper monitoring and treatment.
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2 ReactionsHello Victoria…….also, everyone out there with ET and MPN, and patients that say that they do not get any information from their doctors, this is great and comforting information and I appreciate and thank you for sharing it.
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3 ReactionsMy story is exactly like yours. I am doing blood work once a month and taking hydroxyurea and following my doctor’s advice. Good luck on your journey……..
Claire39
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3 ReactionsGood luck to you also.
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3 ReactionsSorry all - not important, but I caught it today that I wrote oncologist/urologist and of course it should have been oncologist/hematologist. Also, I would have edited the original post, but could not find that option.
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4 ReactionsHi @ttown There’s a window of opportunity for self editing after we first post the reply, but after that ‘closes’ you’re always able to have a monitor edit for you.
To do that, look for the 3 dots … to the low right side of your reply. Click there and you’ll see 3 items listed:
Copy link to clipboard. (So you can copy and paste a link)
Bookmark
Report Comment
If you click Report Comment, a box will open where you correct what you’d like changed whether it’s a typo, or deleting the entire message. Just let a monitor know, they’re happy to help. I end up with typos that I missed that make me look stupid. LOL. So take advantage of that little feature.
Does that help?
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3 ReactionsWhat does ET stand for? I was diagnosed 2 years ago with Polycythaemia Ruba Vera with JAk2 mutation. Does that mean I have a chronic blood cancer??? due to Jak2 mutation...I am confused, just saw this post now.